The girls are 4 weeks old as of today! It’s been an amazingly awful, awfully amazing four weeks 😉. These two little miracle ladies went straight from the operating/delivery room to the NICU, where they’ve stayed their whole lives thus far. While we aren’t completely out of the woods yet, the girls are now what the nurses call “grower feeders,” meaning now their main focus will be to grow and learn to eat on their own. This sounds so mellow compared to the things they were facing before. As promised, I want to share those things with you. The reason I want to share them is because what Romy and Piper went through was very normal for preemie babies born at 30 weeks. For me, knowing that it was normal and expected, and knowing that other babies in the same situation had moved on to be normal and fine, got me through those first couple of weeks. So if you have a baby in the NICU and you find yourself reading this, I hope you find comfort in the similarities to your own story, and know that everything will be ok!!
Things were so crazy during their first couple weeks of life that I didn’t take the time to journal. What we do have to document those days are the daily text message updates we would send out on our family group texts. So for lack of a better way to share it all with you, I figured I would just show you some of those texts :).
Well we’d hoped to give everyone a little more of a heads up than this, but guess what…WE’RE PARENTS!! The girls decided they were bored in the womb and wanted to make an unexpected entrance at 11:19 & 11:20! Today was 30 weeks and 1 day, but they came out as healthy as possible! Baby A is 3 lbs. 1 oz. / 41 cm and baby B is 3 lbs. 2 oz. / 40 cm. They rate premie babies at 1 min and 5 mins after birth on a 1-10 scale. Both babies were rated as 8/9 babies, which is about as good as you can get! They both cried, which was amazing to hear! They’re settled in the NICU and Jen is recovering well. We’ll send more updates and talk to everyone soon, but wanted to let you know what’s going on!
Baby update! We spent some time with the girls last night and to let their names sink in. We’re feeling good about them, so we made it official…baby a is now Romy Jean Nyman and baby b is Piper James Nyman!! Feels really good to call them that!
As for a health update, both girls got PICC lines put in and that’s helping bring them good nutrients. It’s an upgrade from their IV and won’t require them to get pricked with new lines all the time. Romy is doing great. She is just chilling and exercising her little lungs. Piper is having a tougher time and is requiring more oxygen. She had a lung collapse last night but they stabilized her and put in a chest tube. We were just told they did a follow up X-ray to check on her lung and saw that the other lung experienced the same issue so they’re putting in another chest tube to stabilize that lung. We’re told she’s okay and she’ll be fine once the tube is in. We’re going to go visit them as soon as they’re done taking care of her and will send some more photos.
Both girls were under the bilirubin lights this morning! Fun to see them so lit up! They’re both doing great! There’s a chance Romy could come off her cpap machine and breath with less assistance! Piper is doing great and hasn’t needed any meds since 3am! They’re just keeping her still and relaxed, then gonna retry her PICC line tonight. And they both started eating today, which is great!!
And so you know, Romy has the headgear for her awesome cpap machine and Piper is showing off her hair!
Blake got to “kangaroo” Romy for the first time last night (that’s what they call skin to skin) and she loved it – she definitely knows he’s her Daddy and was so relaxed and peaceful. We also saw her head for the first time and found out she’s got some hair, too! Piper’s PICC line finally went in successfully, so that will be so much better for her to get nutrients and stabilize. And that also means they could take out one of the IV’s in her umbilical cord, which wasn’t working very well anyways. She still has her chest tubes in because stuff is still draining from her lungs, but they are keeping her as comfortable as possible. They are both getting milk through a feeding tube and digesting it, and I’m almost able to make enough that we don’t need donor milk anymore! Doctors round at 8:30 so if there are more updates for today we will let you know! Also, we got to see Romy open her eyes a few times!! And I got to kiss her for the first time. So many good firsts for us with her yesterday! ❤️
Not too much to update you on today after rounds – one of the doctors said that in a nutshell, “Romy is doing really well, Piper is doing better.” Romy still has her CPAP on for oxygen just as a precaution but might go off of it altogether today. She has had a couple of episodes of what they call Bradycardia which is like sleep apnea, where she just forgets to breathe. It’s totally normal and since she’s on monitors the nurses or us can just just wake her up and remind her to take a breath. She also might get out from under the bilirubin lights today! We are now going to get to “kangaroo” (skin to skin) her twice a day, once on the day shift and once on the night shift.
Piper is still intubated and has her chest tubes in, but they clamped one chest tube today to make sure it’s not necessary and if she does well they will take it out. We are hoping things continue to go well and they will be able to take her off of intubation and move her to a CPAP in the next few days. We got to see Piper open her eyes again today!
Both girls are getting my breast milk through their feeding tubes, and their amounts they are digesting are increasing!
Tahni got to change Romy’s diaper and give her her binky for a bit this morning before she had to catch her flight. She also got to see Piper open her eyes and little Piper was gripping Tahni’s finger. We are already so sad that she’s gone, she’s been so helpful and comforting to have here!
Update on the girls today after the doctors rounded –
Romy is doing seriously amazing. Blake got to kangaroo her last night and afterwards she got her CPAP off (that’s the thing with the plastic tubes on the sides of her head) AND got out from under the bilirubin lights because her color/levels are looking so good. They have a little oxygen tube in her nose still but that’s just like the ones you see old people with – it’s not breathing for her or anything, just giving her a little extra oxygen. All she is on now is some caffeine to help with that bradycardia I was telling you about and she is still getting nutrients through her PICC line. Eventually when she can eat more and more through her feeding tube they could get rid of the PICC line altogether! Later this afternoon I get to help give her her first sponge bath and then kangaroo with her. And the biggest news for her – she pooped for the first time last night! The nurses were so excited because we were all waiting for it – she’d been eating a lot and we needed to make sure it would come out 😂.
Piper has had a couple good days but we have really been leaving her alone a lot and the nurses have been trying to let her rest as much as possible. Today has been such a big day for us with her already! I got to change her diaper for the first time and I got to kiss her for the first time. One of the neonatal doctors showed us her chest X-rays from each day and explained in more detail what’s been happening with her lungs and where they’re at now. We also got to see where all of her different tubes go. Then we watched the doctor take out her right chest tube!! She also got off of the bilirubin lights! She’s doing well with her feedings and has had a little poop (one thing she did before her sister 😉) She’s also on the caffeine. A next big step for her would be to get the left chest tube out and to move from being intubated to a CPAP.
Also, they met their grandma Becky this morning!!! She got to hold Piper’s hand already and will get to see lots more of Romy when we go back this afternoon!
After yesterday going so well today seems kinda quiet, but as we are learning at the NICU, usually no news is good news! I did end up getting to give Romy her bath yesterday, and got to kangaroo with her for a long time which felt so good without her big CPAP. The only things she has connected to her now are the feeding tube through her nose, the PICC line in her arm where she gets nutrients, and a couple monitors that just stick on her with stickers. This morning I changed her diaper and Blake held her for almost two hours ❤️. She was awake a lot of that time and he got to sit and tell her all about her aunts, uncles, cousins, and grandparents 😉.
While Blake kangarooed with Romy, I got to hold Piper’s hand for the same amount of time which was so amazing. She opened her eyes a lot. The plan with her is still the same, hoping today is the day they clamp the left chest tube to make sure it’s not needed and that it could come out tomorrow. She’s feeding through her tube but still the small amount she started on (3ml) because she’s only digesting about half of it. So pray she gets that chest tube out and that she digests her food better! I think more nutrients would help her a lot 💪🏼. She’s LOOKING way better to us, and the two girls are looking more and more alike to us now!
I cried happy tears when it was Piper’s turn for rounds this morning, because it feels like she’s finally turned a corner. Doctor Hannam said her oxygen levels last night were uncharacteristically GOOD for Piper. The left chest tube has been clamped with no issues, so we think one of the doctors will take it out today. They also said they could extubate her today, meaning she would come off of the ventilator. They might get conservative and wait til tomorrow on that since the chest tube is coming out today, but the important thing is that it COULD come out! She’s holding her feeds a little bit better, so those will hopefully increase more and more too. Right now she’s up to 9ml per feed! Piper’s weight is at 1390kg (that’s a little over 3lbs.1oz.)so she has gained back her birth weight!
Then after all of that good news I got to change her diaper, take her temperature, and swab her mouth with my milk which she loved and opened her eyes to look right at me. ❤️
Romy is continuing to do so well – her feeds are up to 17ml/24 calories. They even mentioned taking her PICC line out within the next few days!! That would mean the only thing she has hooked to her would be her feeding tube in her nose! And I can also start seeing if she wants to pretend to breast feed when we are kangarooing to get her to practice, even tho she won’t really be able to suck yet. She is 2 lbs 12 oz now, she lost a lot of weight but is slowly working her way back up to her birth weight. Becky got to change her diaper this morning and it was a poopy one – so much poop and we all got so excited about it! The nurse made fun of me when I told Blake to take a picture of it. She said she’d never seen anyone do that before, but we are just so happy and grateful she’s pooping regularly! My favorite thing she’s doing now is hiccups that sound like a little frog – she did it last night when I was holding her and then again this morning when Blake picked her up to hold her. I know all babies hiccup, but for some reason Romy’s are extra cute 😉. And it’s fun to hear them on the outside because I felt them so much when she was in my belly.
RJ and PJ update!
Piper is reeling in her sister and doing a good job of catching up! Her levels have been great on the CPAP and they’re slowly weening off the support. Her little lungs are getting stronger! And her feeds are doing well too. They upped her feeds to 14ml and she has low residuals, so her feeds should continue to increase. Gotta fatten these little cuties up! But the best news is that with Piper being on the CPAP for almost a full day, they were able to let Jen hold her for the first time last night! So good to see her being held for the first time and able to have that skin to skin time with Jen! (I was jealous, but I get my turn with her tonight!)
Romy is still cruising along and making it look easy. We were told this morning during rounds that her feeding levels are high (22ml) and stable enough that they’ll be able to remove her PICC line today! So when we make it back later today, we’re hoping to see that thing removed. We’re told if the PICC line is gone, then she can be hooked up to a mobile vitals unit and we’ll be able to hold the girls next to each other!! Really hoping we can all have that experience tonight and these girls can be close to each other again!
Both girls are looking healthier and healthier each day! We’ve been told by multiple nurses and doctors that the girls have been progressing off the charts and they’re super encouraged with how they’re developing!
Piper had a bad night Saturday night and gave us a good scare. She had to get reintubated and put back on the ventilator. The doctor that night was considering sending her to another hospital to get some additional tests done but the doctor yesterday, who’s the more experienced doctor, said it’s not necessary right now and they think they can manage things where she’s at. Bottom line is her lungs are having a hard time developing. Her right lung is doing decent, but her left has been struggling to expand and most likely ruptured while trying to stretch. The rupture is allowing some co2 to escape into her chest cavity and potentially causing other issues, but for now they think it’s under control. It was so sad to watch her struggle to breath Saturday night. Her tiny little diaphragm was laboring so hard for each breath, but once they intubated and gave her some meds she was able to relax and get back to a more comfortable state. We just met with the doctors again this morning and there’s been a lot of improvement from Saturday. We aren’t out of the woods yet but right now she is stable and hopefully she just needs more time for her little lungs to heal and grow. The doctors seem more confident and just want her to relax, sleep and takes things at her own pace. Right now we can’t touch or interact with her much, but we sit next to her a lot and I’m excited for when we can try holding her so I can hold her for the first time.
Romy is doing good. Her feedings are up to 27ml, which sure looks like a lot when it’s going in to that tiny stomach! Somehow I’ve dodged all her poopy diapers but I finally got to change my first one! Can’t say I’m gonna be as excited for the ones to follow. We love our morning and evening kangaroo sessions with her! Jen might’ve gotten spit up on during her last one though!
But we’ll end on some good news. The doctors told us their neural ultrasound results came back and their brains are looking good. We were relieved and super happy to hear those results.
We were so excited Saturday night because we thought that was the night we’d get to bring Romy over by Piper and hold them together, and that’s when Piper had her big episode. So that’s still something we are really hoping for and looking forward to when she is more stable. I snapped a picture of her lungs on Saturday night compared to this morning, and you can see there is a lot of improvement – You can also see the weird little pocket of air in the lower center/left part – they are just keeping an eye on that and hoping it resolves itself with time.
From Jen, later that night
Hey guys – wanted to give you and update since we sent a scary one this morning and things have been a bit more stable today. Plus we just ran out of gas so I’ve got time while we wait for AAA 🙄. They were able to take Piper’s oxygen settings all the way down to a 22 and she’s been really good, and back up to 9ml on her feedings and tolerating them really well. Poor thing keeps trying to pull the ventilator tube out, but she looks a lot more comfortable and hasn’t needed any sedation since they reintubated her. They gave her a small dose of steroids (they explained not the bad kind that can affect her brain!) to help her throat not swell when they do take the tube out. Hoping her levels continue to improve because having that tube in is painful for her, but we are both so nervous for how she’ll do when it’s out.
Romy is doing so great – I got to give her a bath for the second time today and I’m so grateful to have that chance to interact with her – she seems like she already has so much personality.
Hey guys! Piper has continued to be stable and improve on her oxygen settings, so she is doing much better. So much better that the doctors decided to try and extubate her again today and put her on an NIPPV before going straight to the CPAP. (NIPPV looks like the CPAP on her, it also goes through her nose but it monitors and helps her breaths similar to the ventilator.) Piper however had other plans, and soon after the doctors walked away from her she got a grip on her tube and that wild child extubated herself 🙈. She’s been trying to get at that tube for a couple of days now. The nurses have been trying to keep her hands away from it, but her hand slipped past an RT that was trying to reposition her and pulled that tube all the way out. So they quickly just put her on CPAP! Dr. Hillyard decided to go ahead and leave her on it since she’s doing really good so far, but at any sign she’s declining they will hurry and put her on the NIPPV.
Romy is still so good, Blake had a good morning kangaroo session with her. She has started spitting up her feeds a bit but they said it’s nothing to worry about just yet. Just something they will keep an eye on and will try extending her feeds times a bit so she digests it a bit slower.
The girls are officially 32 weeks today! Crazy that we thought I’d still be on bedrest at the hospital at this point. Piper is still doing better and better and they were able to take her down to a level 5 on her CPAP which is awesome – if all goes well, she will stay there until they decide to take her off altogether. Her feedings have gone back up to 14ml of breast milk, and they are hoping to take her PICC line out in the next couple of days.
Romy is good as always and so cute! Her feedings are up to 28ml, but somehow Piper weighs a bit more that her! (Might be because she’s got the CPAP on but it’s still funny!) We’ve been logging lots of hours holding Romy and loving it. I held her swaddled for the first time last night since I’d already kangarooed with her in the afternoon, and it was so fun to be able to stare at her the whole time.
Both girls are obsessed with sucking their binkies! Which is great because it means they’ll want to suck when it’s time to learn to eat. Romy was already rooting around for food when Blake was holding her skin to skin this morning ;).
(Sorry these are long but I decided to keep writing them even when there’s not much going on because it’s how I’m going to journal their nicu time😂)
Romy is doing so good – she hasn’t gained weight the last couple of days so they’re going to just keep an eye on that. They elongated her feed time from 30 to 45 minutes to help her not spit up. We just keep logging those hours holding/staring at her and pray she stays so stable!
Piper is good too! They have been trying to leave her alone as much as possible and let her rest, but every time they check her she’s pulled her CPAP out! She’s done it three times just since I’ve been here this morning 😂. Dr. Wickham decided she’s trying to tell us something – he’s going to turn it down to 4 to prepare her to go off of it later today. They’ll move her to a nasal cannula to give her a little extra oxygen for a bit, and then take her off altogether.
We’ll take these good days, and hope they keep coming!! They are officially 2 weeks old today – it’s gone by so fast but the days drag by slow. We watch babies come and go and try not to think too much about how much longer we will be here. One day at a time! ❤️
The updates today are all just happy stuff!! You already saw that we had a big night last night – Blake got to hold Piper for the first time, and we got to put Romy on a portable monitor and take her across the room – so that I could hold her sitting next to Blake and Piper. We were so happy just to have them that close, and sat that way for a couple of hours. But then before we put them back, the nurse put Piper in my arms WITH Romy! It was another one of those amazing milestone moments we hope for here, and also one of those moments where it really hit us that we have TWO!!
Piper is doing so well on the nasal cannula that it will probably come off today, definitely tomorrow! Her feeds are going up and digesting well to where the PICC line is still on track to come off shortly as well. Then she will just have her feeding tube and her monitors, just like Romy.
Romy finally did gain weight yesterday, which puts her just over her birth weight at 3lbs3oz.
Fingers crossed that all continues going well, and all these little girls have to do is eat, sleep, and grow for the next little while until they are ready to learn to bottle feed!
RJ & PJ Update
Things have really calmed down around here, which is a good thing! We’ve been getting lots of care and kangaroo time with both girls and feeling like we’re in more of a parental program…just stuck in the NICU. Ha. Yesterday Piper had her PICC line taken out and the last tiny little stitch in her chest from her chest tube! She looks and acts so much more comfortable now, which is so relieving to see. The only difference between the two now is their feeds. Romy is at 28ml per feed over 45 mins and Piper is at 26ml per feed over 30 mins. They both still have monitors on for their heart rate, respiratory rate and oxygen levels, and feeding tubes in their noses, but we can easily unplug those for a few mins to take them to the other side of the room. Now the challenge is how do we tell them apart since they’re on the same level!
The nurse yesterday let us have some fun with the girls and do their first photo shoot! It was fun to get them out of their isolettes and play with them in a new way! We sent a video yesterday, but here’s a few phone photos. Once we edit the photos from my camera we’ll send them out. But the best part about it was the girls were able to touch each other again! Well technically it was the first time ever since there was a thin wall separating them in the womb! They seemed so happy to be together and were making the best faces we hadn’t really seen yet! We had some fun but they were tiring out quickly so we put them back to rest. Big day for the girls!
The girls are both doing so well! Both feedings are at 30ml, both still getting some caffeine, and Piper starting some protein today which Romy has already been getting. They are 33 weeks today, and tomorrow will be 3 weeks old! It’s funny cause I still have my pregnancy apps and got a notification that I’m 33 weeks pregnant and my babies are the size of a pineapple. 🍍That actually might be accurate! They’ve both gained a little weight, which is so awesome because we were a little worried about that for a bit, especially with Romy. Romy is 3 lbs 9 oz. and Piper is 3 lbs. 7 oz. Blake held them together yesterday morning for a few minutes, so that was exciting. I got to hold them together in the afternoon, and it was the first time I had time to sit and stare at them side by side. The nurses were all trying to help me analyze their differences but we are all still stumped on how to tell them apart! The only thing we see is that they might have differently shaped heads, so we’ll see how that plays out 😉. They are both on room air for both oxygen and temperature, Piper graduated from her pop-top isolette and now has one like Romy, and they are going to move to a different room soon where they’ll be on the same wall next to each other. They also have different blankets over their isolettes now that let in a bit more light, so you can see them a little better on the cameras if anyone wants to log in!
They are doing so good!! The girls are doing so well – they made the big move to the very back of the NICU and are now on the same wall, so we can pull the curtains together and have our own little area to hang. The nurses joke that it’s the party zone back there with our girls 😂. Both are still gaining weight, Romy is 3 lbs 12 oz today and Piper is 3 lbs 11 oz. Both of their feedings have increased, both are always rooting for food and crushing it with their “pretend” breastfeeding ha! It seems like Piper’s breathing is getting better and better. She still scares us sometimes but the doctors and nurses say she’s progressing and aren’t worried about it at all.
Since the girls are doing so much better, we decided to do weekly updates so we don’t just tell you the same thing everyday 😉. And they really are doing better! Today marks their 4 week birthday, and they both hit 4 lbs a few days ago! So they are basically adults…where did the time go?! 😭 Today Romy is 4lbs 3oz and Piper is 4lbs. 1oz. They both started attempting bottle feedings starting Monday, and are doing really well!! They can take anywhere from 1/3-1/2 of their feedings through the bottle, and then do the rest through the feeding tube. Romy was taken off of her caffeine a few days ago – they are confident enough in her breathing now that she doesn’t need it. They’ve considered taking Piper off, but to play it safe with her lungs still developing they have decided to keep her on a bit longer. The nurses and doctors are so impressed with their growth and progress – although I think they will all be sad to see them go. As for when that will happen – we don’t want to get our hearts set on anything, but the nurses say it could be as early as 2 weeks from now if they keep doing so well! Another milestone – they had the blankets totally taken off of their isolettes to be exposed to cycled lighting. So now they’ve got a great view of ——, especially Romy cause she’s right by the window!